☆'We make our own fairy-tales'☆

When I was younger I always wanted to be a Disney Princess, like most little girls, and I always dreamed of having a big white wedding, and a massive mansion for a home with my Husband and little girl and boy. I always dreamed of having a huge walk in wardrobe, with shoes and clothes in every little corner, like the Hannah Montanna one. I also dreamed of being Hannah Montanna/Miley. I think we all went through that stage, but I always thought I'd get there some day, not neccearily Hannah/Miley but my own self, like her, with all these fabulous things that she had and more. I also always had the dream of being a teacher, then a Nurse, then a Vet then be famous and not need a job, so yeah it kind of escalated quickly what I wanted to be and now I have no clue at all. I think we all know it was never going to happen but we never thought what did happen would.

When I got sick it was really hard for me to accept my new life; I had to become much maturer than I was at the time and now I seem to act like an adult which I hate sometimes. I find it hard to find some things enjoyable or funny when I should and unfortunately it's something I can't change. I have to be mature because if something goes wrong when I'm on my own, or out with my friends, I have to know what to do or I'm pretty much screwed to be honest.

When I was on the Iloprost which was through the Nebuliser I had more freedom than I do now; I was able to do more things, not because I was healthier but because I didn't have a line inside of me. I could swim, I could horse ride, dance, wear certain clothes, not have to be home at specific times, not need to take Oxygen with me wherever I went etc (I can't think of anything else which is quite major). Now that I have the Hickman Line I can't do any of these things because risk of infection and illness, or because my pump can't be banged about, or my medication needs to be changed. And because of all this, I've realized that I have to make my own fairy-tale or I'll get nowhere, not do anything and I'll end up letting my disease beat me. I know that maybe everything in life isn't what I want or how it was supposed to be and I can't change that, however much I want to I just can't, which is unfortunate but it's life now. Yeah, I do get upset about it and I wont deny that. Like everyone I have my good days and my bad days, my good weeks and my bad weeks. I had a passion for swimming, horse riding and dance and now I can't do any of those things anymore. I have to find alternatives which again is really hard because I now have problems with my feet which can't be fixed and it absolutely kills me, drains all the energy out of me, the fact I can't just text my friends one morning and say 'Lets go to town' because it all depends if my parent's are around to drive me, or if I'm feeling up to it, and all that malarkey and I tell you it is really hard to deal with sometimes but I have to make it work, or I have no fairy-tale, no life and I just won't let that happen.

It might not be the most ideal fairy-tale but it works I guess, and if I could change my fairy-tale I wouldn't (except me having a terminal disease, yeah I'd change that) because it's taught me so many lessons in life and I'm blessed to have such wonderful family around and such wonderful friends, because without my friends and family, I wouldn't of gotten through this, I wouldn't of had the strength to create my own fairy-tale and because of them I'm still here, fighting and I don't intend to stop, however hard my fairy-tale gets.

Erika X

Tonsillitis ☹

So, the past week I've had tonsillitis and it's not been very pleasant. I'll be glad to see it go.

Because of my disease I get tired easily when I do things, even just going to a friends house tires me out however I can usually stay awake till about 9-10 then go to bed. But with having tonsillitis as well as my disease I've been sleeping in the day for 2-3 hours as well as going to bed at 11ish. Since last Friday I've lost my appetite and have been sleeping all the time, I've also lost my appetite too from the pain I've been in. Thankfully the doctors prescribed me antibiotics and my course of them finishes tomorrow. After a whole week or having no energy to do anything and falling asleep all the time hopefully by Tuesday I can start to get back to my old normal self, well as normal as that can be.

This is the 2nd time I've had tonsillitis this year so I've decided that if I get it again I'm having them taken out because I really do not need the extra tiredness etc (as I get that already and having an infection on top makes it 10x worse) and I need as much energy as I can so if it's something that can be avoided then hopefully they'll take them out, but like anything with me we have to speak to Great Ormond Street first. I'll wait to speak to them at my next appointment which has just been confirmed for October the 2nd where I'll also be seeing the Lung Transplant team, due to my request of wanting to see them; only thing is I had questions and now I can't remember them. Oops.

Results day is in 4 days so fingers crossed.

Erika X

ComPETition time

I've had a pretty hectic past couple of weeks if I'm honest but I'm so excited about the fact that I've entered Fudge into the 'Cutest Pet August 2014 Competition'. Fudge is my pride and joy even tho he can be very misbehaved sometimes. He's practically my baby and I've missed him so much this week as we've been on holiday at Pontins in Brean Sands; but I'll touch on that later. I must admit, Fudge is rather spoilt but he has to be as I can't have children, he has to be my child. Fudge always comes in for cuddles after breakfast because he hates early mornings and loves a good lie in. He also likes to run off with all our underwear when Mum is trying to put the washing out. It's not funny but I'm sure Fudge would disagree if he was here. At the moment he is at my Grandparents in Brighton having a holiday with my Grandma, Grand-dad and their two dogs. Were collecting him tomorrow which I'm so happy about, yay.

*Please please please can you take a minute to VOTE for Fudge to win the competition, thankyou!!*

(link is below)
http://www.petvote.com/aug14/fudge-cowie

A week and 2 days ago was my birthday, I finally turnt 16, which to most isn't such a massive thing but to myself and my family it is; another year I've accomplished and got through my illness, another year that I've managed to keep well 80% of the time, and another year that I've been able to experience life more. I got diagnosed when I was 13 in 2011, so it's been 3 years now. Sometimes it feels like a really long time, but now while I'm writing this, it really doesn't seem like a long time. It feels like yesterday for goodness sake. I hate that. So yeah, it was my birthday and I turnt 16, woo hoo. I woke up at 6:40 in the morning and had to wait till 9:00am to get my presents and McDo's breakfast. I received a lovely bunch of presents from my Mum, Dad and brother. They were; a sparkly blue jumpsuit from Miss Guided, Marc Jacobs Daisy perfume, 2 Pandora ring and a Pandora charm bracelet, a Thomas Sabo charm bracelet, a Thomas Sabo charm and a Disney charm (which of course was Tinkerbell),  I also got a new camera, the Fujifilm Instax Mini 8 to be precise and it is FABULOUS. At lunch time, we went out for lunch with my Grandparents however I didn't feel that well because of the heat and the fact I had been up since 6:40am. We had a lovely lunch, took some pictures, had a giggle and I got given some money in a card from my Nan and Grand-dad. When we got home I hooked myself up to some oxygen as I felt faint and lightheaded and definitely did not feel great at all. Mia and Callum came round with some fabulous 1 & 6 balloons for me, I was so so happy, I've wanted them for ages and I'm so glad they got them for me, honestly I would have been fine with just the balloons because they amused me so much. Mia got me a new makeup brush and Paige got me a new top as well as the balloons that they bought together. The card Mia got me is my favorite out of all of the cards I've been given, it's Barbie and Barbie? I'm not sure who the other girl is but lets just say it's me and Mia in New York. As the day went on more family came over and I got more wonderful presents from everyone which I'm so grateful for. My birthday kind of carried on till Sunday, on Thursday I got a few presents from my Grandma and Grand-dad, perfume and eye make-up remover as well as a Chinese take-away which is my favorite. On Friday I received another present from my Mum and Brother which was a black and white canvas for my bedroom when it is finally done, it has so many old pictures on there as well as some new ones from prom and my last day of school. Saturday was my birthday party, it was fancy dress with no particular them and we were having a BBQ too. I spent the day at my Nan's house which them and my cousin's and my Aunty Kay (they came down especially hehe as we don't see them often). One of my oldest and dearest friend's came over, Chloe; to do my hair which took 1 hour and 15 minutes because my hair was too thick, and we were stressing and losing the will to live. We had a good old catch up and had a right old giggle, especially at the fact how disgusting we looked back in the day and how many photos we used to take, which I now look back on and think what the heck did we think we were doing. I got my fancy dress outfit on, which was Tinkerbell and had a wonderful evening; taking pictures, having pictures, having giggles, having catch up's, eating food, having fun and seeing all my friends have a wonderful time. I got so so so many card's and presents from bath bombs, to DVDs (the whole Tinkerbell series to be precise), a new watch, some rings, money, perfume and make-up. I had such a wonderful evening and I can't thank everyone enough for there generosity and the fact that nearly every single one of them made the effort to come in fancy dress. My birthday was an absolute banger and it was all down to my family and friends. Especially my Mum and Dad because without them my birthday and my birthday party wouldn't of been made possible.

This blog post is quite long so I'm gonna shorten it up now. Our family holiday at Pontins was great, it was a massive family holiday with 18 of us there, all my cousins, Aunties and Uncles and all extended family (i.e girlfriends and boyfriends). Lets just say, without Jess, I wouldn't of been able to cope with both the Dan's on my own. We collected so so so many tickets between us all, I had over 2,500, whoops. The boys played football, me and Jess shopped, we played ping pong, went to Weston-Super-Mare for the day, went out for lunch, got milkshakes, spent loads of money on rubbish we didn't need but oh well, had a MAHOOSIVE water fight, went to the arcade and generally just spent some well needed family time together. I've wanted one for ages and my Grand-dad made it happen, so I'd like to thank him for making it happen. And as per usual my Nanny and Grand-dad were absolutely hilarious and kept me going. While we were on holiday I bought a book called 'this star won't go out', it's about a girl called Esther who had cancer and unfortunately passed away, but now her story (journal) had been turnt into a book. I'm not that far into it, but I'm really enjoying it so far (enjoying probably isn't the right word but you know what I mean, I hope).

As always thank you for taking the time to read my blog and I hope you are all doing well.

Erika X

P.s if you'd like to vote for Fudge it would be a great help, here's the link:

 http://www.petvote.com/aug14/fudge-cowie

のTime flys

So my birthday has come around pretty quick and I have had no time to blog recently and neither will I have time this week. I'll do a better blog post at the end of the week when I have time but now I really don't. My birthday AND my birthday party was fabulous and I thank every single one of my friends and family for my gifts and for coming to my birthday party. I was so impressed that most people came in fancy dress and the ideas people came up with were amazing. I'll do a blog post about everything on Friday/Saturday and I shall include fabulous pictures of fabulous people.

Night night.

Erika X